Just an average chick living a new normal somewhere between Wonderland and Cancerland.

Saturday, January 06, 2007

There are so many words for vomit... which one shall I use?

I'm so tired. Sleeping is all I want to do. Felt the same last week up until the weekend when I somehow perked up for 4 days, drove 2 hrs. to Toronto, partied (lightly) for New Years. The day after we got back home, the fatigue set in again. Is it depression? Is my fibromyalgia back? It's been years since I've had a fibromyalgia episode.

I attributed the fatigue last week to steroid withdrawal but after my 4 days of chipperness I thought I was over it. Makes no sense. I'm scared something is really wrong. Do I have tumours near my heart, in my liver, somewhere else that would account for the fatigue? I don't know much about physiology.

I've been crying a lot. I guess that optimism, strength, cheerfulness, inspiration I had been feeling for a couple months was steroid induced. It wasn't me, it was the drug... damn, that's a disappointment. I really hope the steroids weren't just masking this mood, but that this mood is just a withdrawal symtom. I could sleep 24 hrs. a day. But I have to get up for certain things, and to appear ok. Today I went to a movie with my dad. I nearly fell asleep. Napped from 11:30am-12:30pm (had to get up for movie) and 4pm-9pm then Derek woke me up. I made myself get up to eat something. I have no appetite, the thought of most things makes me queasy, but it is so important to stay nourished. I had PB&J on an english muffin, grapes and applesauce. Then I perked up enough to watch The Black Dahlia on DVD. I liked it, but found it really difficult to follow. Now it's 12:30am and I'm about to pass out.

Had a CT scan today. See my surgeon on Monday and I hope he has some preliminary results at least. Of course, I'm scared shitless what they'll find. I know of 4 probable tumours: breast, shoulder, side, armpit... scared he won't or can't take them all out. Especially the one in the axilla. That area has been pushed to it's limit. Unless they bring in a plastic surgeon, there is no tissue or skin left to stretch and sew back. And I don't want to be cut anymore. My breast will be mangled, my arm will get even bigger if they do the axilla. What if I get even more nerve damage? My arm is destroyed. I'm too embarrassed even to post a pic of what it has turned into: a big fat, limp and lifeless, deformed mess. But I suppose I should to document what I have been through. If I don't make it, at least this blog will still exist.

I don't know when to stop the cherry picking. But they do hurt once they reach a certain size and they grow at such an exponential rate they really can't be left in. But at what point do I try IL-2? Before I had said I wanted to cherry pick until it spreads to an organ and then I'd go to IL-2. But if I was one of the lucky 5% that gets a long remission or even one of the 20% who gets a short remission, I'd get a break, without getting more disfigured by surgery. But the treatment would make me unimaginably sick. I can't fathom going through it for an 80% chance I'll get no response. My brain hurts thinking about it. I'm so sick of being "sick". Yup, I'm throwing a fucking pity party and no one is invited because I'm too tired to socialize.

I want to do a combination therapy recommended by a naturopath either involving high dose vitamin C or mistletoe (or both) and a bunch of other supplements, but we just can't afford it. Mistletoe is the #1 alternative adjuvant treatment in Europe (google it, it's true) and while VC by i.v. is controversial, even some doctors in the states prescribe it as a last resort and there are many many documented cases of complete remission in different diseases, not just cancer. But these are anecdotal cases and studies have not shown it to have significant survival benefit.

It costs $140/week or $50/week if I can find someone who is willing to administer it to me intravenously outside the Naturopath's office. I don't have any nurses in my family though and can't find anyone else. It sucks, because as if we can afford $140/week on top of the $200-300 we already spend on supplements. I know, I know, it sounds crazy, but because I've been alive for over 2.5 years since it recurred in my lymphnodes, and so far has only recurred in soft tissue and nodes, it's impossible to say whether or not the supps have had a role in this. I can't just stop them, in case they have!

Well, this has been pleasant. Needed to vent more I guess. I feel like I just puked up all my worries (ok, a fraction of my worries) all over you. What a mess. I feel like I may have more to come though so beware!

I am so sorry you are having such a rough go of it right now and I hope it will get better for you soon. I wish I could think of something helpful to say but since I can't, know that you are in my thoughts and my thoughts are for better days for you. I'm glad you can vent here and I hope it's at least something of a release.

Vent all you need to. Have a pity party - I'd be there to listen and support you. You have been through SO much with no end in sight.

It's now Monday so I'm wondering what the surgeon recommended. I've really admired those who have done IL-2 -- for me, that would be a huge decision. I really don't know if I'm brave enough to try it if that becomes an option for me. But then there are those (Heystan, Jane from Maine, DavidWi) who have done it and responded well. Decisions, decisions.

Sarah, Sorry this is happening to you - vent all you want! I know what you mean about IL-2. I'm stage IV. I've had 4 surgeries and 20 rad treatments to my arm, but also have 8 lung mets. I'm lucky in that I'm asymptomatic - feeling great, still working full time, etc. My surgeons and onc are recommending I go to another Boston hospital to look at IL-2 as a systemic treatment to wipe out (hopefully) all the mets. I have an appt mid-Jan for a consult to at least discuss IL-2 at a new hospital with docs. I'm scared to pieces about the intensity of the treatment, plus a new hospital and new set of docs and nurses, and the fact that I'll feel sick...but, if it's a shot to kick mel in the ass - I think I need to suck it up and take it. I hope whatever decision you need to make works for you.

I wish I had words to comfort you and relieve you of this stress. I so wish that I could offer you somthing to make it all go away. I really mean that. Needless to say, you don't deserve any of this. Vent..I am listening. I wish I could offer you more than just my ears.Thinking of you loads,JanetteT (from you know where)

Okay, if you and I are having a party, I'm making Cosmos. So what if it's a pitty party. :) It's all gravy, girl. Don't even get down on yourself for all the things I know you can't help but worry about right now- you and I both know there's too much "positive thinking" malarky out there anyway. I say you're doing awesome, and you're dealing with all of this with a grace and style I can only envy. Even Jackie O would envy your grace now.

We're all rootin for ya (there's some Texas for ya. Yeehaw!)and I'm lighting a candle for you tonight.

Sorry to hear you're having such a tough time right now, hon. It totally sucks, but I think it's all part of the process and something that you WILL get through. I know what your worries are AND how much the tiredness can debilitate you.

Then you're dealing with your surgical recoveries, which have been fast and furious and that alone can send you spiralling, you've been injured and just as your body needs time to heal, so does your psyche.

Add in the thought of more surgeries, more treatments that scare the hell out of you and it gets to the point where you just can't think about it any more. Sometimes a meltdown is necessary... I think we'd go nuts without it.

You've dealt with so much in such a short time, including the limited mobility of your arm, which must be so difficult to live with. And you've done so well. I don't know what to say to you but this too will pass. You know how and why I know this, I'm not saying it lightly.

In the meantime have that huge freaking pity party - nobody can be strong and invincible all of the time. Just let it all out!

So the steroid fuelled strength is gone, so what? You're about to discover a whole new aspect to yourself as a person which will make everything you were before seem pale in comparison as you go forward from strength to strength. You WILL come back from this, sweetie. You will.